English Version

My name is Lorena Dávila Hernández, and my story with diagnosed pulmonary hypertension started May 29, 2006. Obviously by this date I had already presented with almost all the symptoms and honestly I have no idea how or when they started; the only thing I know is that I felt that I tired easily and that I was a little short of breath, but I didn’t pay attention and simply thought it was because I was gaining weight, and just went from there.

I continued on with my life as normal and slowly my lack of air became more of a problem. I remember very clearly that I went on a mission with a group of nuns and one day we went walking. The walk was not completely straight; there were some light hills and small slopes, and I can’t forget that there was a moment when my heart started to beat very quickly, like it wanted to escape from my chest. I couldn’t continue and then even though it may seem incredible, I waited a moment and kept walking; for me everything went on as normal. After that I went back home, and for a few days I had abdominal distention. I thought it was colitis, and actually that is what the doctors told me. My lack of air got worse, and I started to get inflamed eyelids, lips, and legs. My lips got darker—a sort of purple—and I got to a point where I could only walk a few steps and I would get really tired. This was no longer normal. I went for a consultation at the university hospital, where there were a lot of questions and studies; the dates I had at my 21 years of age were only with the doctor. It began to get exasperating for me, because there were tests after tests, specialists…I couldn’t always count on the money in this stage of going and coming to appointments and tests. I lived very close to my brother Jaime since my mother was not in good health, and my brother was very preoccupied and desperate as well since we didn’t know what was going on with me; at the very least we wanted a name for this, and at the time we didn’t have it.

I could not rely on social security, and I had to have a cardiac catheterization. Before it came to this, the doctors had already ruled out a lot of diseases, and what was missing was the most important, what they left to the end—pulmonary hypertension. I remember that I had come to the cardiologist with my record and explained my symptoms, and the cardiologist read my record, left, and talked with colleagues; they all were murmuring and turned to look at me in a weird way, like I was some kind of phenomenon or something. They started me on Nifedipino and some diuretics, told me to rest, and told me that I need a catheterization. At the time we could not afford it, and I had to wait a while. Although I couldn’t believe it, I started to feel better; I noted how much I was improving and started to work; in this way I obtained social security.

One day I felt really bad. I started to have trouble getting air, and then I couldn’t breathe. I felt like I was suffocating and I fainted. This had happened to me before. They called it “syncope” and for me (I don’t know about for other patients), syncope is the most horrible sensation, the symptom that hurts me most when it presents itself. It’s the sensation of drowning and feeling that no matter how you breathe it is not enough, until you faint. It’s seconds, but for me it’s like it is hours. That day I fainted I was taken to the doctor and given an electrocardiogram and an echocardiogram. The doctor told me that it could be pulmonary hypertension. The doctor gave me a paper so that the social security office (IMSS) would quickly give me the pass to the specialist, and it was there where on May 26, 2006, they gave me the catheterization.

May 29th my sister Carmen went with me when I had spirometry done. The doctor in charge of the Pulmonary Physiology Ward is the Dr. Alicia Ramírez, and I can’t forget that she looked me in the eyes and told me that I had a chronic disease called pulmonary hypertension, and that the disease is terminal, but that fortunately I turned out to be a responder at 20% with adenosine, which was good. I didn’t get scared, I just stayed stunned. I always thought that I had very good health, and that day I realized that it wasn’t so. Everything was changing so drastically that I didn’t know what to do.

It turned out that Dr. Alicia knew a lot about HAP because she is a specialist in the disease, thus I was with the right doctor. I remember that I arrived at the house and gave the news to my family. Everybody was disconcerted. We had never heard of this condition. Everybody was sad, and I went to my room and started to cry. I had always been Catholic and that day I said to God that I didn’t want an explanation, I only asked that God give me the strength and that He help me because I was not going to give up, that I had to fight, that I was going to fight and I had no intention of dying soon from pulmonary hypertension.

It hasn’t been easy, but with my family supporting me and giving me their love, everything has been more manageable. Doctor Alicia and Dr. Carlos Jerjes, a pulmonologist and a cardiologist, have helped me enormously along with Dr. Susana. They are amazing doctors—humble, accessible, and very humane—and they are excellent because they help not only me, but many other patients with PAH.

Today I speak with all sincerity that this disease has changed my life in a good way, in the first place because I have kept becoming closer to God, and I have learned to value the little things in life that others do not. If sometimes I feel weak, God has shown me that He is with me, and that I am very strong. I consider myself very courageous, and a woman that won’t fold or let myself be destroyed so easily.

Dr. Alicia and Dr. Jerjes invited me to participate in a drug trial with oral Trepostrinil, and I accepted. One of my sisters said that I shouldn’t, that she was scared, and why was I letting them experiment with me? I told her that to fight and find a cure, they needed brave and determined people that weren’t scared, and that I had these requirements. I wanted to do something for me and for others. YOU CAN’T ASK FOR HEALTH, YOU CAN’T ASK FOR MEDICINE, YOU CAN’T ASK FOR A CURE IF YOU WANT EVERYTHING TO FALL FROM THE SKY FOR YOU. IF YOU WANT TO HELP ME DON’T ASK ME THAT I STOP THIS BECAUSE I WON’T. I’M THINKING NOT ONLY ABOUT MYSELF BUT ALSO IN OTHER GENERATIONS, IN MY NIECES AND NEPHEWS. I’M GOING TO PARTICIPATE.

The drug trial was a big challenge for me, and even moreso when I found out all the secondary effects: headache, nausea, vomiting, stomach ache, jaw ache, face flush—some or all of these symptoms could present themselves. Like always, Jaime went with me the day that I signed the informed consent. The most important rule was to try to tolerate the medication as much as possible. I was to start with 1 mg in the morning and 1 mg at night, which I did. Then all of the symptoms manifested themselves, and at that moment I thought of giving up, but I reflected on it and continued onward. At one point I was able to tolerate up to 10 mg in the morning and 10 mg at night. It was too much!!! My quality of life got better and better, until I was leading a very nearly normal life—climbing stairs, wearing high heels, dancing; I felt excellent and very happy. The best was that my 6 minute walks were more than 500 meters and without dyspnea, with good saturation and good heart rate.

The results were excellent; I only had to give up the trial because I got pregnant. To clarify, I didn’t plan it—it was unexpected and I wanted to have the baby, giving the him the opportunity even though the prognosis was bleak. At home, everybody was upset, but that was to be expected—they were scared and were worried by what this could mean. However, they also supported me in my decision to have the baby, and my husband also supported me and felt sad. I started to take sildenafil. I couldn’t enjoy my pregnancy like other women. It wasn’t easy; I lacked air and I tired easily, but I wanted the baby to make it. I wanted to make it too because I wanted to know the baby, kiss him, hold him, and spoil him, and I felt bad because I started to think about what would become of my son if I died. Who else can give him what only I as his mother can give him??? But I prayed a lot to God and followed the instructions of my doctors.

My baby is named Said. He was born at 33 weeks because my BNP was 1444 and the doctors thought that my heart could not stand any more—I had to get the extra weight off my body. Said was born February 18th, 2011, at 2:10pm weighing 2.230kg. He spent 15 days in NICU. I was very delicate. Obviously they gave me a C-section with general anesthesia, which means that I didn’t notice when my baby was born, I didn’t hear him cry, I couldn’t see him and I couldn’t kiss him. These are the things that hurt me the most. I went to intensive care. They said I was in critical condition and the next 72 hours were very important. They told my husband that we already knew the risks and that he had to wait to see how I would react and how things would progress, and that he should pray. I was in intensive care three days. Then they told me to stay in my room, where I was for four more days until they released me from their care with the recommendation to rest and continue with my medicines.

Said was one week old when I met him, and in this moment I felt so sad because I thought that my baby didn’t deserve this. He needed a healthy mama, not someone like me, and I decided right then to fight harder than ever for Said and Diego (my husband), because I don’t want to leave them alone. Now I will fight harder, because I have an extremely important reason for which I live.

I’m just now getting better. All this time I have had very high BNP, above 1000 mg/hg. I feel better and better, and most importantly my last BNP was a few days ago, and it was 130 mg/hg. I will continue to get better and I am confident that I will get to the level I was at before.

Said is 18 months and is a very healthy baby, very strong. He is my greatest satisfaction, my greatest accomplishment, and the most important reason that I have to keep fighting. Diego and Said motivate me day by day to fight. Together, they and I will go forward with the help of God, the doctors, and the support of my family and friends.

I invite all of you to not be scared in the face of this disease. It’s true that there is not a lot known about it, but we must keep fighting to bring knowledge and awareness about it. It isn’t easy, but I know and trust that the cure will be found because we have advanced so far with the medicines. Soon we will have that which all patients and our families so long for.

FOR ME NONE OF THIS HAS BEEN EASY. I TRIED TO LEARN ABOUT THE DISEASE AND GET USED TO IT. I DECIDED TO ACCEPT IT AND BE HAPPY WITH IT. I LOVE EVERY INSTANT AND MOMENT OF MY LIFE AND I ENJOY IT TO ITS FULLEST, BECAUSE I WON’T THINK ABOUT DYING YOUNG OR LET IT GET TO ME. I ONLY THINK ABOUT FIGHTING, COMING OUT AHEAD AND BEING HAPPY. SOME DAY I WILL DIE; I KNOW THIS BUT I AM CONVINCED THAT IT WON’T BE SOON, SINCE PULMONARY HYPERTENSION HAS GOTTEN TO KNOW ME, KNOWS HOW I AM, AND KNOWS THAT I WON’T LET IT DEFEAT ME. SO GET READY BECAUSE I’M BRINGING IT ALL!

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.